Normal

This is not normal. Since the day we came home after Thatcher’s first surgery with an overwhelming amount of medicine to give twice daily, medicine has become normal to poor Thatcher. I’ll never forget the look on BJ’s face as he sorted through the sack full of meds and syringes and list of directions. I sometimes worry Thatcher feels like he is being punished as I squirt syringe after syringe full of smelly medicine down his little gullet, but sadly this is really all he knows.

His meds have fluctuated post surgery but consist mostly of supplements since his body has a hard time absorbing the proper nutrition from his food. We are up to 9 meds now thanks to an additional round of something Pittsburgh prescribed to prevent Thatcher from getting chicken pox from BJ’s shingles to be given 4x/day. His meds consist of Vitamin K, Vitamin D, Vitamin E, Multi-Vitamin, Zinc, Actigal (a bile binder...whatever that means), antibiotic, medicine for itching, and now a round of chicken pox prevention. Poor guy! We HATE medicine and hope that this part will at least get better with fewer meds after transplant. (He can get down to 2 meds/day about 6 months post transplant). I worry so much about the long term affects of all of this. I know post-transplant medication has its own set of side effects I won’t go into, but I try to push these thoughts out of my mind because we really do not have a choice. Thatcher needs these medicines to survive.

It’s very hard to feel “normal” most of the time when all this medicine, the whole ordeal really, has consumed our life. It is increasingly more difficult to concentrate on anything else but the impending transplant. I do not want this disease to define our family or Thatcher so we work hard to continue to enjoy normal, boring things. Boring is nice for us.

Poor Thatcher also has to contend with normal baby things like teething. I knew it was coming, but look what I found Sunday... Thatcher was not acting like himself Saturday and kept me up most of the last few nights. He had a low grade fever, but unlike “normal” kids, a fever means a trip to the ER for us. We are supposed to call if it reaches 100.5. We skirted this temp and I am holding my breath hoping that it is teeth causing the problem, not an infection. I hate to see him uncomfortable but of all the meds we give, oddly enough, he is not supposed to have much Tylenol and NO ibuprofen. Tylenol is processed through the liver and ibuprofen in the kidneys. The kidneys need to be preserved for post-transplant meds that can be hard on them. Geez! To add to our worry, Thatcher cannot undergo surgery unless he is healthy so the closer we get to transplant the more important it is to keep him healthy.

I guess everything is relative. We feel normal, even somewhat healthy, in the hospital around other sick children, but I find it hard to be around normal children sometimes too. Even Amelia reminds me how easy it would be if Thatcher did not have this disease. I don’t mean to sound negative because we, unlike so many families with sick children, have HOPE for the future. Here is a verse a co-worker recently shared with me:

“Be Joyful in Hope, Patient in Affliction, and Faithful in Prayer.” Romans 12:12

Along with Thatcher’s healing, I have always prayed that Thatcher will not suffer. I also pray for our peace. There just doesn’t seem to be an end. A transplant is a lifelong commitment. I just hope it’s a happy life. I think it is important to stay positive, but it is very difficult. There are many complications and things that could go wrong with surgery and recovery. Not to mention they tell you that rejection is always a possibility. Today I pray for Thatcher to have a good quality and normal life, ours too.